At the Core

So far we've explored how treatment effectiveness, our enthusiasm for our treatments and what people have tried. Today, we look at a different angle on treatment options: what do people currently consider to be the core of their protocols.

This is different from what we were looking at in the last couple blogs because it is less about what we've tried out and more about what we are relying on, based on whatever level of experience we (and our doctors) bring to this.

We'll also look at a couple of the specific protocols we surveyed about to see how those are working for people.


Here's the data from the survey:

Now, I could spin these results in a myriad of ways. Here's a few:

• People who try more things get better at a higher rate (I spun one of my other blogs in just that way, remember? See how the purple line pokes out further on most things?) In other words, integrative medicine is the way to go, and the more angles you hit lyme from, the better off you'll be.

• People who get well are the ones for whom either antibiotics and/or herbs work well. (Given that there is lots of purple on both of those.)

• Given that the best outcome patients only rarely ventured outside this list of 6 things as their cores, if you are going to get well, you'll probably find it here. (This analysis is especially suspect: just because I surveyed about them doesn't mean they are all that special. If I'd asked, say, about hyperbaric chambers, they'd probably have a similar response to some of the stuff here.)

• In general, you are fortunate if you have access to antibiotics (a doctor who will prescribe them) and they work for you. Almost 80% of people doing well have them as a core, while only 62% of the worst outcome people do.

• The biggest gap between worst and best outcome patients is in the use of herbs. Therefore, herbs must be a key thing for getting well.

(Side note: see how much fun it is, playing with statistics? I could write a whole blog on how tempting it has been to spin data to fit my own preconceived notions biases. As a general media literacy rule, always be wary of how people spin data! Look at the graphs closely and see if you see a different interpretation.)

Unfortunately, I have no way of knowing which of those spins is actually true; or perhaps a better way to say it is that each of those spins is probably true for some people and not true for others.

I do find it interesting, though, that antibiotics are only core for about 70% of us. I regularly hear people on our support lists express surprise that there are non-antibiotic options out there, or that people are trying anything else. And here's some concrete numbers to say, yes there are other options, and not everyone is primarily focused on antibiotics as their core... in fact a significant minority are looking elsewhere for healing, a chunk of whom are doing really well.

Beyond that, this is one of those blogs where I invite you to pick your own spin. You've seen a LOT of data from me, and probably have looked at other people's as well. What do you think is going on?

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Now, I worried a little bit that there might be a built in problem here that related to time. We all know that chronic lyme cases don't resolve overnight, and it seems like the first thing that almost everyone tries is antibiotics. We also know that a lot of folks in this survey are relatively new to the treatment game (just over half of the people in this pool have been treating for 2 years of less).

So maybe people are doing best with higher doses of antibiotics just because they are on them longer? Or maybe people give up on certain protocols, or we put faith in different things depending on the time we've been in treatment?

(I actually fully expected that second thing to be true, that we'd see a drift away from antibiotics and toward more alternative things as people decided the first thing their doctors tried wasn't going to work for them. There's those biases rearing their ugly heads, eh?)

So I ran these numbers about treatments for longer and shorter term patients, and here's what that looks like:

If you can see something here you'd call statistically significant, I'll eat my hat. When you take into account that the sample sizes for rife machines and essential oils are pretty small, I don't see any significant differences here at all. So the differences we see in core protocols don't appear to be because people tend to gravitate toward one end of the antibiotics-alternatives spectrum over time.

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I also wondered if the variations were more about who we see (or don't) than anything else. Here's the breakdown, based on what type of practitioner support we have:

Now this is interesting! Here we do see significant differences (and in the next blog we'll look at lyme treatment success rates among different types of practitioners). The bottom line is that MD's are far more reliant on antibiotics as the core for treatment than ND's and OD's.

And people who are either essentially self-treating or relying on less knowledgeable doctors (which in some cases is functionally the same thing) are more likely to try a variety of options. This is probably in part because most non-LL practitioners won't prescribe antibiotics for the long term, and so they are forced into looking at other things.

However, some people are in this category voluntarily; they are choosing (either based on philosophy or giving up on professionals) to do it alone, in spite of the fact that it reduces their treatment options by eliminating access to long term (or any) prescription drugs.

Most interesting, perhaps, is how many therapies have a high enthusiasm rating (see my "Healing with an Open Mind" blog) and are not being used by lyme literate doctors, and especially MD's. This isn't that surprising  because MD's (like every other group of humans in the world) tend to rely on what they know, and antibiotics are one of their primary tools in their practices in general.

This information can be particularly helpful if you are in the process of choosing a lyme literate practitioner (and are either fortunate enough to live somewhere that gives you options, or are going to have to travel no matter what). Considering what your own preferred approach would be to healing, it is a good idea to choose a practitioner who is going to support hat basic mode.

As a very general statement, here's what I mean. Fan of antibiotics? Look for an MD. Interested in herbs and other alternatives? Look to the DO and ND doctors for that. Of course, you always want to ask about how that specific doctor approaches it, and these are generalities. Still, they look pretty significant to me, and knowledge, as they say, is power.

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OK, I want to go down a side street before we close today. I had asked survey questions about two particular protocols (and of course since starting this process a couple months ago, have come into awareness about many others I could have asked about... next time!)

I had meant to include this with the last blog, but spaced it out. (You know how that goes). Here's the info about those two protocols.

 I've included the info about antibiotics and herbals next to these specific protocols because these are basically subsets of the larger categories: Marshall uses antibiotics as the main bug killer (in conjunction with other things) and Cowden is an herbal protocol.

It looks like both protocols perform as well as their larger categories, but they don't generate more enthusiasm. It isn't surprising to see them tried less, as there are any number of variations on the theme of antibiotic and herbal protocols.

I don't think this reflects the same kind of belief biases I was discussing in the last blog so much as there being a plethora of choices within each other larger categories.

Prayers for Silver Bullet Unanswered

What works and what doesn't for treating lyme is probably the single most talked about topic on our support groups. Today, Lyme Voices wades into the fray with our survey results on this question. This will be the first in a series of blogs on the treatment questions.

The number one thing I took away from this is that there is no silver bullet that works for everyone, and everything I surveyed about got a "very helpful" rating from some people. That clears it right up, doesn't it?

The way the ratings work for the charts I'm presenting is that I asked people to rate things they had tried with their sense of how helpful it was for them. Then I calculated the average response using these numbers using this formula:

Not helpful = 0*
Somewhat helpful = 1
Helpful = 2
Very helpful = 3

Thus, if everyone who tried something rated it as "very helpful", it should have a rating of 3. It turns out that everything I asked about falls between a 1 and 2-- overall, somewhat helpful to helpful. If we'd hoped for a resounding "This is it!" response, I'm afraid these results** disappoint.

So, we have a top cluster of antibiotics, infrared saunas and herbal antimicrobials. I don't know with the sample size we had if there is much of a statistically relevant difference between these three. But it seems that these three come strongly recommended by chronic lyme patients.

The second cluster also represents treatments that have a good amount of enthusiasm among the people who have tried them, landing right in between "somewhat helpful" and "helpful": IV vitamin C, vitamin C and salt, rife machines, homeopathics and essential oils.

The last category in this very rough clustering are methods that have clearly helped some people, but the support is more luke warm: colloidal silver and hydrogen peroxide. Both of these were also the only ones of the ten in this chart who had more "unhelpful" ratings than any other answer (among those who had tried it).


What works according to those who are getting well

Now, let's look at the same ten treatments, with the folks that have had the best outcomes next to the general lyme populations' responses. By best outcomes, I mean people who are reporting being 75% better or cured.

First, a little additional background on this crowd. There were 69 people in these categories in our survey; only 19% of the people who answered this particular question***. Of people reporting best outcomes, 57% have been actively treating for at least 2 years. That also means that 43% of these folks have been at it for less than 2 years.

That got me curious about how many of them may actually be experiencing a first remission, and not actually going to hold steady with what they are currently reporting. This, in and of itself, is very good news, and given that so many people (66 to be exact) in our survey report no gains or backsliding since starting to treat, it makes sense to count them as having a good outcome, even if it doesn't last or stay steady.

However, it is different than just looking at the pool of people with both a lot of years under their belts and good outcomes--for that we'll need a much larger survey. Then we could speak more confidently about the effectiveness of treatments over the long haul.

Still, here's what this group says. The order of treatments is similar, but it appears that this population has stronger opinions about things. The rating system is the same.

What we see here is that the top 3 answers land in the helpful to very helpful range for people who are doing the best. Again, antibiotics, herbal antimicrobials and infrared saunas top the list. (Now, does that means that if these three things work for you, you'll do well? Or does it mean something else? Need more data!)

Again, our middle cluster falls right between "somewhat helpful" and "helpful" and includes essential oils, rife machines and vitamin C/salt (which are more highly regarded by this group) and IV vitamin C and homeopathics (which don't show any significant difference among those in this subset).

With our third grouping, colloidal silver and hydrogen peroxide, we see them drop below the somewhat helpful line. As with the full survey group, the most common response among those who had tried these was "unhelpful". My conclusion would be that, while they may help some people, they wouldn't be the first thing I'd gravitate toward.

Next blog, we will look more closely at these numbers and break them down in some different ways. For now, go forth and discuss!


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* I considered making "unhelpful" a negative number. I think if I redo this survey, I'll add another choice, which is "harmful" and that really ought to be what gets the negative rating. "Unhelpful" could either be a neutral or a negative, so it didn't feel right to make it negative.


** The astute reader of my blog will probably have noticed that not everything I surveyed about on this question (which was #12 for those using the questions blog as a reference point) is here in the charts. I decided for reporting to make sure I was doing apples to apples. So the ten I've included here are ones that people are using to kill off our shared pathogen of lyme.

So, I left out: fungal and parasite pharmaceuticals; herbs for support of treatment and cleansing and detox. I've also left out, for now, the two specific protocols I asked about: Marshall and Cowden. We'll circle back around to these other ones in later blogs.

In doing so, I am leaving aside for the moment all the myriad arguments ala: "there's no scientific evidence that this kills pathogens." People are using these ten things for that purposes, regardless of the arguments swirling around them, and thus I'm interested in what patients report.


** I don't think we should conclude from this that only 19% of people can get well or show major gains. A lot of folks who have gotten well are probably not all that focused on lyme any more and thus did not participate in this survey, or even tune into its existence; I feel lucky that a handful of them are still around and did participate!

Playing Co-Infection Roulette

You're familiar with Russian Roulette? The game where you put one bullet into an old-style gun, spin the barrel and shoot yourself? It's the ultimate playing of the odds... you only have a 1 in 6 chance of dying, right? And boy, what a rush. Never quite understood it myself, but I've always been a bit of a nervous Nelly when it comes to my physical body. Plenty of excitement in the world without courting danger, ya know?

I've always been more of a nature girl myself. I like the calm of sleeping next to a river, the sounds of nature and soft winds lulling me to sleep and gently tugging me awake in the morning. I love fresh air and feel spiritually fed by being in the natural world. Of course, what we are realizing now is that I've been playing my own version of Russian Roulette the whole time. All those hikes, camping trips, canoe trips, living in a tent for some festival or another... heck, just walking down the street, enjoying a closer connection with the natural world than I can get from my living room perch. "That tick? May be nothing. Or may be it's fully loaded... you just have to take your chances."

Most of us who have lyme managed to get the combination pack... it seems like hardly anyone has lyme only. And that makes treatment much more complicated. Here's what we are dealing with:

About 3/4 of us have Bartonella, and 2/3 Babesia. This charming couple (let's call 'em Bart and Babs) have some symptoms that overlap with lyme, and some of their own unique horrors. Bart makes neurological symptoms worse, and can be accompanied by a streaky rash that looks a little like out of control stretch marks. It also contributes to the general fatigue and headaches. Bart lives inside your cells and (partly because of that) can be hard to pin down on a blood test. One strain of Bart causes cat scratch fever, and it is known to be carried by human body lice across the globe. (See isn't this fun-- you can get lyme from one bug and then a bunch of other stuff from other bugs and just sort collect them over time, accumulating health issues as you go along.)

Babs is often the culprit if you think you are having a heart attack of entering early menopause (or if you are a guy with menopause-like symptoms, such as hot flashes and night sweats.) If you have the quite literally named "air hunger" or have chest pains, it might be Babs. Babs is a parasite and is treated similarly to malaria.

For a much more thorough look at co-infection symptoms (and a longer list of the possibilities) I recommend downloading the excellent "Lyme & Co Symptoms Checklist" on the Living Lyme site (scroll down the right hand side on this page until you reach the downloads).

There's also a quicker intro to 5 co-infections here. While I take issue with the idea that lyme is "easily diagnosed" (see my last few blogs) this is a sound basic intro that you can share with folks who might want more information and don't have the patience to wade through the more thorough checklist.

Because lyme rarely flies solo in our systems but usually has all these friends along, I like the term "Multiple Chronic Illness Disease Syndrome" rather than simply chronic lyme.

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We will next be looking at symptoms, and then move into the treatment section of the survey. But for now, I'm offering a little treatment foreshadowing. Why is treatment so complicated with lyme, and what do the co-infections add to that mix?

Lyme would be much more simple to deal with if it were an "ordinary" bacteria however, spirochytes are more complex than most and some scientists actually think they should be in their own category.

Lyme can exist in 3 forms, and it is skilled at choosing the best tactic for survival at any given time. The spirochyte form is the great traveler: its unique shape lets it burrow into tissues and take up residence in almost any system in the host body. When threatened, though, it can turn very quickly into a "cyst" form, which is the hiding out form. One of the main reasons why a quick dose of antibiotics won't cure a lot of us is that the clever little devils go cyst-form on us and just wait it out. The antibiotics given for spirochytes don't touch the cyst form. The third form is a specialized form of bacteria called a "cell wall deficient" bacteria. Many antibiotics work by destroying the cell walls, which for an ordinary bacteria is the end of the story. However, no cell wall means there needs to be a different approach to killing them.

So now we are up to needing three types of treatment just to handle the lyme bug itself.

Lyme has two other tactics to keep alive. One is that they can ball into clumps, essentially protecting the inner layers from whatever treatment you are throwing at it. This doesn't mean new methods are needed, but it does add more time to the treatment. (They also have a very long reproductive cycle-- 4-6 weeks; most bacteria's life cycles are measured in hours. This also means longer treatment times are needed to wipe them out.) And finally, a lot of bacteria (including lyme) produce gelatinous goo in your bloodstream called "biofilm". This gives the bacteria a safe haven protected from treatment and also can make your blood sluggish, reducing the amount of oxygen your organs are getting. While the jury seems to still be out on how important biofilms are to address, many lyme literate doctors suggest taking a remedy to help get rid of them.

See how they are a lot harder to kill than ordinary bacteria? And this doesn't even take into account switching up medicines to avoid creating superbugs resistant to antibiotics. And... we haven't even gotten to the co-infections.

Let's just take Bart and Babs. Bart, luckily, is also a bacteria, so the methodology for killing Bart is not so different from killing lyme. While you may want different antibiotics or herbal antimicrobials to address the two things, they are at least not requiring a new category of remedies. Babs, however, is a parasite.

There are several big categories of bugs that can make you sick: bacteria, parasites and viruses are chief among them. And they are all treated differently. On top of co-infections, many of us find ourselves with old illnesses re-triggered. How that works is that you may, like me, have had mono (Epstein Barre Virus) when you were 19, and the virus has essentially been held in check by your immune system since then. Now, however, as your immune system becomes weakened, the EBV reasserts itself and now must be dealt with as yet another infective layer in your system. Part of how MCIDS patients end up taking 10, 20, 30 pills or liquids a day is that we have our own particular soup we are dealing with.


For lyme alone, you may find yourself taking:

1-10 pathogen killers: pharmaceutical antibiotics, herbal antimicrobials, rife machines, etc.
probiotics to counteract the negative affects of your main treatment
an additional "cyst buster"
biofilm reduction
vitamins for general immune support and to replace what the lyme is pulling from your system
medication to help sleep
medication for pain management
medication for energy support
medication to manage other symptoms (such as depression and neurological issues)

Let's assume, for simplicity's sake, that your Bart treatment is included. Now add several remedies each for the parasites and viruses you are also dealing with.

Here's the protocol I've been on for my diagnosis for the past 6 months (with links for the specific products I'm using as resources). This combo is designed to treat Lyme, Bart, Babs and Epstein Barre Virus.

600 mg/day (in two doses) oral doxycycline: for spirochytes
grapefruit seed extract w/ oregano oil: for cyst busting and antimicrobial
3 kinds of probiotics, rotated
lumbrokinase: for biofilms
multivitamin for general immune support
vitamin D3 drops (lyme uses up vitamin D and can leave you horribly deficient)
lauricidin: for bacteria and viruses
garlic tincture: for bacteria, viruses and parasites (mine is homemade)
slippery elm: for helping my tummy deal with the garlic and doxy
MRibose: for energy regulation
clay cleanse: for detoxing and heavy metals removal
ibuprofen as needed: for pain management
Night Rest herbal and mineral formula: for insomnia
rife machine sessions rotating between the 4 diagnoses and kidney/liver support
massage twice a month: for lymph drainage and pain management
detox baths a couple times a week and drinking lemon water as needed for further detox

Lest you think this is crazy complicated, my protocol is simple compared to a lot of peoples, and probably considered "not aggressive" enough by some since I'm only taking one pharmaceutical antibiotic. I'm in the process of switching over to a protocol based on Dr. Buhner's Healing Lyme book, focusing on his recommended herbs, the rife machine and an infrared sauna.

We'll talk more about treatments in a week or so. Next we turn our attention to symptoms and the impact lyme is having on our lives.

Gathering Pearls

Hey everyone! Welcome to my new (first ever) blog!

During the two years I've been treating my chronic lyme, I've been increasingly impressed with the lyme community. We have a very complicated, not very well understood illness. The medical community is wrapped up in controversy, and there are days when it feels like more attention is going to politics than to finding cures. Because of that controversy, patients can experience denial of health coverage (even those who have "good" insurance) doctors who won't even see them with this diagnosis, and talented, dedicated doctors being "disciplined" for practices that are considered, by some, too controversial.

Hello?!? It's ALL controversial! (OK, maybe not lemon water; but pretty much everything else, as far as I can tell, is.)

It would be hard enough if we just had one of the most complex illnesses known... but you add on top of it all the other financial and political stuff, and (in the words of a fellow lyme blogger) everyone who has this illness is an automatic badass. *

 
I love this community.

Lyme patient voices aren't getting nearly as much play as the experts (the best of whom readily admit that there aren't any experts on this illness yet, and we are all experimenting our way to health...) And why not? The juiciest learning I've had has come from fellow patients. We need lyme patient wisdom, and we need it pulled together by someone who has the patients best interest at heart, outside of the politics and the profit motive and grinding medical philosophy axes until we're all dead. Being a patient, and as motivated by enlightened self-interest as the next person, I figured I qualified. And being more functional than a lot of fellow patients (at least for now) I felt able to do it.

So I decided take things into my own palsied hands and do a survey, which ran from June 17 to July 1, 2012. This blog is to share the results, the implications of those results (at least as I see them) and give us a place to talk about it.


What kind of study was this, anyway?

There are all different kinds of research for gathering information. Lab science tries to eliminate  complexifying factors and study one thing at a time. This is incredibly valuable! Breakthroughs can happen with real clarity from lab experiments, and we desperately need more of them. All you lyme scientists out there, know you have our gratitude for your work.

Field studies (such as testing out a new protocol with patients) are different in that it is impossible to eliminate all variables, but the information you get is, in some ways, more "real world"--what is true in a lab may or may not have applicability once you add real life into the equation. It's not so important for a patient what happens in a petri dish; what matters more is what happens in our actual bodies. Put another way: Killing spirochytes in a petri dish is great! Killing them in my body is infinitely better. So field studies are also really valuable, but they are messier.

And then there are studies in the more "soft" disciplines realm of psychology and sociology. They are messier still. And they also have a place for learning about a medical topic. This is because things like attitude, philosophy and hope matter, and petri dishes don't tell you squat about those. Some of these psychological and social factors affect field studies, and are thus useful as a companion to medical research being done in the field. (Dealing with actual humans is messy. Meh... life is messy.)

So my thoughts are this: I want all of these kinds of studies to be happening, and it takes a lot of time to do them right. Meanwhile, we are suffering; some of us are dying. We need something sooner than the timeline it will take to do the 10,000 studies that it would be a good idea to do in labs, fields and psychological or sociological tests. And I want to know about things that no one (that I'm aware of; at least in the US) is really studying: things like rates of misdiagnosis, rife machines, medical philosophy, stress and optimism. And I want to know what patients say when they aren't under a professional's microscope but are really just talking to peers.


So think of studies as being a big batch of apples, oranges, bananas and kiwis... they are all valuable and a monodiet isn't nearly as good for you as fruit salad. They are each a different batch of data points. And none of them is perfect.

You can think of what I've done is a kind of freelance, not very controlled peer survey. Take it with the same grains of salt and the level of validity you'd take sitting around the table late at night when the insomnia strikes and chatting with other friends who also have lyme; don't take it as a particularly scientific study. I asked 50 questions that I was curious about, figuring that my curiosity might be similar to others. As one fellow patient, Jennifer Middleton, commented after taking it, "(I) was asked questions that were closer to my own concerns and symptoms than I have by my own Dr... It was not impersonal but really geared to our real life." That was the point! Hooray!

The survey garnered responses from 450 people with chronic lyme in just two weeks.** I'd love to see a similar study done on a much larger scale and with more careful methodologies. Still, I'm pleased to have sampled the tip of the ice burg. (450 of you really worked up the energy to answer a bunch of questions for me?!? How cool is that?)

Asking questions is the heart of how lyme patients learn to get well.  However, how often do we get a chance to ask hundreds of people the same questions? (And wouldn't our poor lyme brains fry trying to make sense of them all if we did have all those people in the same room? I'm tellin' ya, it was way better letting survey monkey do most of the math!) Asking each other questions is really valuable, and yet we run the risk of only getting a limited perspective when we ask a friend, or the 20 who happen to be awake and articulate when we post our thing online, or the 12 that showed up for our support group meeting that night... you know what I mean.

It seems far better to gather together a lot of perspectives. Rather than take a chance that the person I happened to ask will have a pearl of wisdom, I'm seeking patterns, a whole damn necklace of pearls as it were.




Onward on our own

Thanks to a dozen factors, lyme patients have been put in the position of often having to lead the way in areas that we aren't professionally trained to do. So here we are again, and so be it. In this blog, I'll muddle through and share what I've learned, give you the stats as I've gathered them, and hope it is of benefit to many other patients out there. I'll talk treatment and philosophy, money and politics, stress and support. And hopefully you will talk back, and we'll create another little pocket of spirochyte-addled, supportive community right here.

Welcome to Lyme Voices.

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Thanks to Marsha Marcinko, Stacey Dana Price, Dave Mack and Tim Hart (and anyone else I haven't tuned into) who helped get the word out and make this survey a success, and my deep gratitude to everyone who filled out the survey (especially those who had to overcome technical strangeness and lyme-rage inducing frustration to get it to work). Thanks also to Cob Carleton for survey Survey Monkey support.

* You can get this sweet shirt here.

**The number of responses to any one question varied, as I didn't require an an answer to any of them. Also, a handful more folks started taking it, but then answered "I don't think I have this." I'm not counting them in this number.